Jayda, 7, suffers from the extremely rare Sanfilippo Syndrome, a complex condition caused by an enzyme deficiency.

It results in extreme activity, restlessness, sleeplessness, and often difficult behaviour. 

Eventually sufferers lose the ability to talk, understand and walk.

Their life expectancy rarely stretches beyond the teenage years.

The Gunnedah family will feature on Channel Ten’s The Project tomorrow  night after five hours of filming at their home this week.

Two cameramen and a reporter arrived at the Hannaford’s home to film as part of a feature on the newly formed Sanfilippo Children’s Foundation and its fund-raising mission for treatments of the syndrome.

The crew filmed Jayda, who is unable to walk or communicate due to her condition, completing hydrotherapy exercises in the spa and being tube fed by her parents, as well as family time with little sister, Lucy.

They also filmed a one-on-one personal and emotional session with Jayda’s parents, Craig and Anna, to show the severity of the disease and how it affects their daily lives.

Mrs Hannaford said there were overseas developments for possible treatments of the condition, but “just like everything they cost a lot of money”.

“I agreed to filming our family because Jayda’s condition is quite severe. I think people need to see how quickly Sanfilippo takes hold and what she was like to how she is now – and that this is what will happen to the other children if they do not receive treatment,” she said.

She said even if enough funds are raised to bring treatment to Australia, it won’t reverse Jayda’s condition but would be extremely beneficial to children being diagnosed now and in the future.

– The Namoi Valley Independent